Monday, April 30, 2007

Healing and Happy

Molly has been happy and seems to be doing quite well. She has started moving her right leg all around and can lift it all the way up while on her back. She still isn't moving her left leg, but we're hoping that this will improve with time. We got to remove her bandages on Friday and all of her incisions look good. There are a lot of them (around 12 on her legs).

We got to give her first bath since before surgery yesterday and she seemed to enjoy it. She was a little uncomfortable when I took her out (without her splints on), but for the most part it went better than expected.

Jim's Mom was with us for over 2 weeks and left on Saturday. It was nice having an extra pair of hands this past week and it is an adjustment today being home with her by myself for the first time since before her surgery.

Thursday, April 26, 2007

Videos Worth Watching

Here is a new video of Molly spoon feeding herself for the first time CLICK HERE

CLICK HERE to see a video of a 5th grader with OI (Type III) that is going to the National Spelling Bee. It is a great interview. I don't know this little boy, but really enjoyed seeing the video and hearing what a positive outlook he has on his life.

Tuesday, April 24, 2007

Making New Developmental Strides

I had a meeting with Early Intervention today to discuss Molly's developmental goals and successes. As I was telling them that Molly hasn't been doing a lot of babbling she started babbling up a storm. She has continued to babble all day, hooray!

The OT had me working on a bunch of milestones with Molly, with very little success. I tried working on some of them today and she got it on the first try. It is nice to have these small successes. I was feeding her yogurt and she started having a tantrum, I couldn't figure out what she was upset about and finally determined that she wanted the spoon. She started feeding herself with a surprisingly high success rate. After a little while she decided that it was easier to just stick her hands in the yogurt and eat it off her hands, so she is obviously not quite ready to spoon feed herself, but we are one step closer.

It was hard meeting with the OT week after week and having them set goals that involved me working on skills that Molly had no interest in like stacking blocks, putting things into a container, etc. It is nice to finally have some success without a lot of tedious drilling.

I am not sure if these new found successes can be attributed to her just being older, or whether the pain medication is allowing her to progress and do the things most kids are doing at her age.

I am hoping that her progress will continue after we stop the pain medication.

Today was a great day in Molly-Land.

Happy pictures of Our Little Girl

Hooray! She fit in the swing with her splints on...
Here she is hamming it up for the camera. A bean bag chair has been a great thing for sitting post-surgery:

Here's a picture of her with the splints off and talking on the phone... Can you tell how much straighter her legs are?

Sunday, April 22, 2007

All are Feeling Better

Molly has been napping better the past two days and she slept through the night. We spoke with another OI Mom (with 2 kids with OI) and she suggested that we needed to have Molly on more pain medication. That seemed to help her last night, so we will be scheduling medication throughout the day for the next several days. I am feeling terribly that we should have been continuing with her medication the past several days.

I know it is a learning process, but I wish that Molly wasn't impacted by our mistakes.

Jim finally seems to be feeling a little bit better. This is the sickest I have ever seen him. Terrible timing and awful for him. We are just hoping that none of the rest of us, especially Molly, come down with it.

Slow, but steady progress :)

Friday, April 20, 2007

Restless, but Healing Well

Molly's legs are doing well and she has even started moving her right leg, splint and all.

She was up crying every 45-60 minutes all night long. This restless night made for a a somewhat irritable girl today. Tonight has been a similar night with her up crying every 30 minutes or so. We are exhausted. To add more stress to our lives Jim seems to have come down with a horrible stomach bug and has been getting sick since coming home from work.

I am SO tired. I am hopeful that Molly will settle in for the rest of the night and I can get a few hours of uninterrupted sleep.

I am so happy that her leg is healing so well, I just hope we can get her to get some sleep. I am also hoping that she won't get whatever Jim has.

I'm sure this is just a small bump in the road, but I sure hope it is behind us soon.

On a good note... she fit in her swing with her splints on and had a blast out swinging today - HOORAY!

Good Night :)

Thursday, April 19, 2007

Home Again, Home Again :)

Hooray! We are home after a long day of travel and are looking forward to a good night's sleep.

Molly was up off and on all night last night, so the 3 of us got very little sleep. I think she is starting to feel better and is not liking having the splints on that are limiting her movement.

She went to bed early tonight, but has already woken up half a dozen times crying, so it might be another long night. We are hoping she just needs to get back into a regular routine and then things will be smoother during the night.

We can't say enough good things about our experience at Children's Hospital in Omaha. The staff was amazing. Dr. Esposito is such wonderful man and did a phenomenal job on Molly's surgery. I feel so fortunate to have someone like Dr. Esposito as a part of Molly's care. He is very good at what he does and clearly cares a great deal about his patients. He really seemed to enjoy spending time with Molly and even wanted us to send a picture of her to him. What a difference a good doctor makes.

If you have a child with OI and are reading this blog, I would like to encourage you to make a trip to Omaha if you can find a way for your insurance to pay for it. I assure you that it is worth the battle. We have been to a lot of doctors in the past year and hands-down, Dr. Plotkin and Dr. Esposito are two of the most amazing doctors we have had the privilege of meeting.

We briefly met with Dr. Plotkin yesterday morning to touch base about Molly's infusions and are going to work on doing them at home. This would be a huge improvement over spending the night in the hospital!

I'm not sure I have documented exactly what they did in surgery and thought it would be good to jot down while it is still fresh...

He started with her right femur (the more bowed of her femurs). He used an F-D rod, which is a telescoping (or growing) rod. He had to make 3 osteotomies (breaks) in her femur in order to insert the rod properly.

He then went on to her Tibia and inserted a "wire" (thin rod) in through the top of her Tibia made 2 osteotomies (breaks) and removed a portion of the most bowed part of the bone.

He then did the same to her left leg, but with fewer osteotomies in the femur.

She has bandages on the incision sites and will have those on for another 9 days. She has splints that go up the side of her leg and are held on with Ace bandages. She will need to keep these on for another 4 weeks. We will take the splints off a couple of times a day and do very small movement of her leg and foot to keep things from getting too tight. We have been told that as the kids start to feel better they will start to move around with the splints still on.

I'm sure that it will be a matter of days before Molly is trying to get around on her own. We are going to try putting her on her belly with the splints on in the next couple of days, it will be interesting to see how that goes, I don't know what to expect.

Wednesday, April 18, 2007

Out of the Hospital and Heading Home

We checked out of the hospital yesterday afternoon and all is going relatively well. It has been VERY nice to sleep in a real bed and to be out of the hospital environment.

We are still trying to figure out Molly's pain medication dosing, but she is doing phenomenally well. We have snagged her splints a few times on her car seat and stroller straps, which has been upsetting for Jim and I and painful for Molly. We are working on getting better at getting her in and out of things to minimize this problem, but it is so upsetting when we are trying our best and cause her pain.

She is down to 1-2 doses of pain medication (mostly Motrin) at this point, which is remarkable for so soon after such a big surgery.

She is more and more interested in communicating and is using new signs and accurately answering questions with yes and no. She has had a few complete meltdowns, which is new and is very upsetting because we are not sure if it is just normal baby frustration or if she is in pain. PLEASE start talking soon!

We are heading home tomorrow and are SO excited to be back in our own place. I have been doing dishes in the hotel sink and I am looking forward to the comforts of home. Keep your fingers crossed that we make it home without incident.

We have been even more anxious than usual with Molly in her even more fragile state. Her feet stick out beyond her stroller and we are constantly on the defensive as people go about their day and get too close for comfort to Molly and her healing legs.

We will be sure and get more pictures and video up once we get home and settle in.

Thank you to everyone for keeping in touch and wishing Molly well.

Monday, April 16, 2007

Remarkable Progress :)

I got to hold Molly for the first time since she went in for surgery:

This is Molly signing that she would like to swing :)

Here is our happy little girl:

The PT came up and encouraged us to get her in a sitting position... I can't believe she's sitting less than 48 hours after surgery!!

We are 48 hours out from surgery and Molly is doing REMARKABLY well!! We have had to give a lot less pain medication and she seems to be feeling better by the hour. When she has gotten fussy it is hard to know if it is just because she's fussy or if she is in pain. We have tried to err on the side of medicating rather than allowing her to possibly be in pain.

I think that we will be able to dial down her pain medication more and more in the coming days and it will be easier to know if she is in pain or just fussy.

The surgeon has come in to check on us each day, which has helped to put my mind at ease.

Her left foot is rotated in slightly and we are hoping that in time it will get better than it is presently. Dr. Esposito said that he could do some manipulation to help that, but he said he didn't think we wanted to hear her cry. I think we will ask him to advise us about what is better in the long run. He thinks she will need to have her Tibias re-rodded in 12-18 months, so we can always aim to correct and improve things at that point. They are already remarkably better than before surgery and it is hard to complain about that.

She is starting to babble a little bit more, so we're hoping we are progressing closer to more words. She is now more consistently saying "mama" and "dada" appropriately as well as saying "woof, woof, woof" and "teddy", so her vocabulary is definitely expanding.

Sunday, April 15, 2007

Pictures and video after surgery

Molly sleeping in our room right after the surgery.

Molly showing first signs of being herself on Saturday afternoon

Molly reading a book Sunday morning, feeling a lot better

Look ma, no wires!

Video of Molly saying Mama yesterday: CLICK HERE

A Few Hours Sleep

We upped Molly's pain medication yesterday afternoon and that seemed to make a huge difference for her. She started to look and act more like the Molly we know. She started exploring her tubes and monitors and started pulling at her arterial line. I noticed some blood around the bandaging and called the nurses in. We were not aware of the risks involved with this line. We were told that had she pulled it out she would have started gushing blood like you see in the movies. She could have lost a lot of blood rather quickly. I did not need more reasons to worry, but we now had something new to watch.

The nurses were able to tape up the line more effectively and it has been much more stable since.

We all slept from 12:30 - 5:00 a.m. without waking up! I feel so much better!! Molly also got a solid block of sleep during that period, which I think has served her well.

Dr. Esposito came in this morning to check on us and saw a much more animated patient, which was a nice change. She is reading her books and playing with her toys and seems to be doing so much better.

We just had the nurse come in and removed almost all of her sensors and tubes - HOORAY! She can now hold her toys and books etc. This is going to help reduce her frustration and also reduce our anxiety as she gets more inquisitive about the tubes and bandages.

We're now down to her leg splints and bandage over her new port. they have also reduced her monitoring, so that must mean Dr. Esposito is feeling better about things as well.

Thanks for checking in on her and we will continue to keep you posted.

Sarah, Jim and Molly

Saturday, April 14, 2007

A Long Night, but All is Well

We finally got to see Molly last night just before 7. She was so puffy from all of the fluids that I almost didn't recognize her. They had just given her some Morphine, so she was quite sedated, but didn't appear to be uncomfortable.

She was doing well enough that we didn't have to go to the PICU (Pediatric ICU), which was a nice surprise.

She was comfortable for the first couple of hours and then her heart rate increased and her breathing was more labored. It has been a roller-coaster ride with her pain medication. When we hit it right things are going fine, but when we are late or haven't given enough she was rather uncomfortable and cried out this quiet little cry (after being intubated during surgery). Around 3 or so this morning she came to and looked at me and seemed to register who I was for the first time. She looked and simply said "Da" (for Dad), so I woke up Jim and she was very happy to see him. He seems to have the magic touch when it comes to soothing Molly. It is so hard not being able to pick her up, but we know that will come.

She looks a lot longer with her "new" legs. It will be interesting to see how different she looks when we get to look at what is under the bandages.

Her temperature has been between 98 and 102.3, which is normal for post-surgery. Her breathing continues to be labored, which is an indication that she is still in pain, but seems to be doing much better than last night. We have stopped giving her Morphine for the time being and that seems to have made her feel better. Apparently Morphine can make you feel just dreadful. We're happy we had it for those first few hours, but we are now hoping to graduate on to different medication.

She has had some Jello today and a little bit of pears, but thus far has not been all that interested in eating or drinking. We're hoping that this will improve by tomorrow. She came to enough earlier today to actually play with a toy or two, which was a great sign.

I'm sure that tonight will be another rough one, but we are hoping that things will be going better by tomorrow.

Dr. Esposito, the Orthopaedic Surgeon, checked in with us today and showed us the films of her legs. Both femurs seem to be looking good and he is pleased with the outcome. Her left Tibia (shin bone) looks nice and straight, but her right Tibia has a little bit of a bow in it. He thinks that the bow he sees in the films shouldn't be too big of a problem and things are certainly worlds better than they were before. He did say that her bone was soft, but didn't give us any predictions for when to expect a need for new rods. For some kids they need rods within a year and other times kids can go several years without a problem. Most likely the Tibia rods will need to be replaced before the femurs, so at least the surgery won't be quite as extensive in the future.

Thank you again for all of your messages, thoughts, and prayers for Molly.

We will be working on posting pictures when we can.

Friday, April 13, 2007

Out of the Operating Room

Molly is out of the operating room and currently in the recovery room. It will be at least another hour before we will get to see her, but the surgeon has assured us that things went well and that she is doing OK.

He was able to rod all four leg bones, which was the outcome we were hoping for in an ideal world. We are anxious to see her, but can breathe a little easier knowing that she is in recovery.

According to the surgeon we have a rough couple of nights ahead of us, but by the 3rd day she should be doing better.

I can't wait to go and see her, but I am also quite apprehensive to see her in pain with lots of tubes and bandages. I know that in the long run this was the best thing we could do for her and we will have to keep that in mind as we go through a few difficult days.

Thank you to everyone for your emails, thoughts and phone calls. They have made today a lot easier for us and I know that Molly has benefited from everyone's thoughts and prayers.

We will continue to keep you posted as things progress.

Molly is in currently in surgery

Molly went in for surgery at around 10:45am central time. She is having a port installed first, and then she will have the rodding surgery next.

So far we are all in good spirits, and Sarah has a good feeling about everything.


[UPDATE: 12:10pm] The port surgery was successful with no complications, and Dr. Esposito has started the rodding surgery.

[UPDATE: 2:45pm] The right leg is finished, and went well. He is moving on to the left leg now.

[UPDATE: 6:00pm] The surgery is finally over. The surgery went well. Molly now has F-D rods in her femurs, and wires in her tibias. Molly is recovering now, and Sarah will be able to go in to see her in an hour or so.

We've Made it to the Big Day

Well, as someone reminded me. My goal was to make it to her surgery without a big femur fracture and we did it.

Molly and Jim both had a relatively good night's sleep. I didn't do quite as well, but still managed to sleep a little.

Molly is happy this morning and we are trying to enjoy every last minute with her.

We're trying to stay positive and think good thoughts.

Here's to a successful surgery and a good outcome for Molly.

Thanks to all for your messages. Thanks in advance for keeping Molly in your thoughts today.

As my Dad would say... "Stay Tuned" we will try and keep you in the loop via this blog.

Sarah, Jim and Molly

Thursday, April 12, 2007

We made it to Omaha

(Jim - filling in for Sarah)

After a LONG day traveling on Wednesday, we have finally made it to Omaha. Snow in the midwest caused our flight to Chicago to be delayed by several hours. Our luggage managed to take a different flight from Chicago to Omaha, but we did recover it all eventually.

Just the anticipation alone for what is coming tomorrow is very stressful, but we're managing pretty well so far. Sarah is very happy that we came a day early so we could have a day here to prepare ourselves. My parents will be driving in from St. Louis to help provide relief later tonight.

The next update will probably be Sarah's Mom to keep everyone in the loop about the surgery.


Molly's Last Bath Before Surgery:

Tuesday, April 10, 2007

Packing Up and Heading Out

Ugh, we are EXHAUSTED!! We have had some long nights with her this past week or so. Jim worked until 12:30 last night. We are so very tired.

We are in the midst of organizing and packing up our things for our big trip. We have one suitcase and Molly has 3. There is just SO much STUFF to bring for an 8 day trip.

We will be flying to Omaha tomorrow, settling in on Thursday and then heading to surgery on Friday. I have been so busy getting ready I really haven't taken the time to stop and think about what I am getting ready for. I know I will have hours and hours to think about what we are doing while she is in surgery. There is no question that she needs the surgery, and there is no question that Dr. Esposito is one of the best, so that should help while we sit and wait for somewhere between 10 and 12 hours. The surgery itself takes somewhere between 6-8 hours, assuming that he is able to do both legs in one surgery.

We also got a call yesterday from the hospital. They were able to find a surgeon to do the port surgery, so she will also be getting a port on Friday. I think that this is going to be a good thing for Molly.

My Mom will be keeping the blog up to date while we are in Omaha.

We are about to undertake the scariest thing we have ever had to go through in our lives. Any emails would be welcome and encouraged. It is nice to read well-wishes when you are in such a stressful situation. I probably won't write back, but I assure you they will all be read and appreciated.

You can email us at: sksullivan8 ( at Sorry for the funny way of writing the address, but otherwise we will get lots of SPAM for products and services we do not want.

Thanks in advance for keeping Molly in your thoughts this Friday.

Sunday, April 08, 2007

Happy Easter!

We have had a rough few days here, but today was a good one!

She has been up crying off and on all night. This started on Wednesday night, so we're not quite sure what is the cause. It is hard to imagine what could be bothering her that is so much worse than her fractured leg. She was sleeping fine until Wednesday. We got very little sleep on Wednesday and Thursday night. She was up and crying every 20 minutes or so throughout the night. I gave her pain medication through the night, but it didn't help. She has been happy during the day, so it is hard to pinpoint the problem. We took her in to the pediatrician to make sure that it wasn't an ear infection or some other "normal" baby problem, but everything looked good. He did notice that she has several teeth coming in, so we're thinking this might be the cause of the crying. It is so hard to try and guess what is causing her discomfort. I am SO looking forward to her being able to communicate with us.

We did an Easter Egg Hunt for her today. We hid 3 Elmo eggs in her playroom and asked her to find Elmo. She was not particularly interested, but Jim and I enjoyed ourselves. We also "hid" food around the hall in corners for a Howie (our Pug) to have his own Easter Hunt - very funny!

Molly seems to be getting more interested in trying to communicate. She often signs "more" when we are doing something and she wants us to do it again. She does a lot of nodding and shaking her head (often, but not always accurate), which is adorable. She has started signing for "light" and "drink" (which look the same when she does them). Most of her signing looks similar so you have to guess based on the circumstances what she means.

We are working on getting ready for our trip later this week. We will be flying out on Wednesday. Her surgery is on Friday. We'll be checking in around 10 (Central Time) for surgery at 12. We are waiting to hear whether there is a surgeon that can add a port (a vein access "button" that is under the skin). That would be helpful to have for IV treatments and is a quick access point in the event of an emergency.

Last night I didn't wake up until 6:15, I am hoping that I will be able to sleep through the night tonight and more importantly, I hope Molly is able to sleep without crying out.

Happy Easter Everyone!

Monday, April 02, 2007

ANOTHER New Surgery Date

Today has not been a great day. I went to pick up my car that was being worked on. I put Molly into the car seat and further injured her leg. It was bad enough that I decided we needed to get an X-Ray. I also called the orthopaedic surgeon in Omaha to see if there was any way to move up the surgery date (if he thought that was appropriate).

We got the X-Ray and it seems to be a fracture of her Tibia. They helped us make a splint and we're hoping that will help.

I put her in the car to head home and the door wouldn't close (that's what it was in for all weekend). This is the 5th plus time that they have tried to fix the problem. It is hard when your new vehicle is one more thing to be worrying about. If anyone knows about the Lemon Law details... please pass them on. This door has been acting up since we bought the car (brand new). The timing couldn't have been worse today though. Thankfully, after about 20 minutes of working on it (with Molly screaming at me) I was able to get it closed and head home.

Now for some good news... we were able to change her surgery date to April 13 (next Friday). Yes, Friday the 13th. A lucky day in our family. Molly was born on Friday the 13th, as was my brother (actually Friday April 13th). My parents were married on the 13th, and my Grandmother and Aunt were born on the 13th. I'm hoping this is the good luck that we need for her surgery.

I have already changed our flights, hotel, etc. We used Southwest and you don't have to pay to change your ticket (unless the new ticket is more expensive), which was a nice surprise.

I keep fluctuating between thinking that 11 days is very soon and thinking it isn't soon enough. This was definitely the earliest that we can do the surgery in Omaha, so now we just have to hope that it is soon enough. So, everyone think good thoughts for Molly a week from Friday (around noon).

We will work on posting some new photos, but there is a new video that is a MUST SEE of Molly "talking" CLICK HERE